Category Archives: cancer

i am either a storm or a drought

i am either
a storm
or
a drought.

in-betweens
have never
been my thing.
~ Sanober Khan

The Judgment of Paris; Paris seated on a rock choosing between the goddesses Venus, Juno, and Minerva, the god Mercury with a caduceus in between them by Giorgio Ghisi

Men choosing women, that be some crazy shit there.  Paris, the god credited with starting the Trojan war because he was a wimp and choose the one that offered him the most beautiful woman instead of those who offered dominion over Europe and Asia OR battle skills and wisdom – even those male gods often thought with their dicks. I mean he had to pick between (per the picture):

  1. the Roman goddess of wisdom and strategic warfare, and the sponsor of arts, trade, and strategy.
  2. the Roman goddess who was the protector and special counselor of the state.
  3. the Roman goddess whose functions encompassed love, beauty, desire, sex, fertility, prosperity and victory.

Which is pretty much what every woman is capable of doing individually in a mythological triumvirate.

But me… I am here, at the grand milestone of being half way through chemotherapy.  In this special place of being half way done, I am fully done with the first medicinal cocktail known among us cancer hipsters as AC. AC is a shitstorm, one of those  (the A) has the nickname of the red devil or the red death and yes, that medication is fucking super strength Kool-aid red. It gets hand injected into you, and is the reason why I succumbed to the port being placed since its superpowers include being able to completely destroy any muscle it comes into contact with, so one little leak and plastic surgery would have been required. It causes all sorts of problems in spite of that.

I stand with that behind me, and the last single spirit, known as T, ahead. T being something that most tolerate a bit better, and I pray, wish , hope, make offerings that I am one of those.

I have lost most of my hair, but not all – and alopecia is a nasty thing but having some hair and some baldness is quite another.  I do, with some degree of pride, have an excellently shaped head. For the record, all ones hairy areas tend to lose hair, which is rather interesting to witness.

My superficial body fluids have turned into wax. My eyes water thick goo, my saliva is like syrup, and my sweat is like a coating of candlewax.

I have developed mouth sores, but was able to contain those nasty fuckers whose inauspicious start is as blisters around my mouth which turn into miniature wounds, sensitive to everything.

My nails, fingers and toes, are in a state – they feel as if they are slowly dying and agonizing death.

Cancer is a financial blow, so much so that my family started a gofundme for me. This is something my husband and I are trying to manage, it is so humbling in ways that I am not fully prepared to manage, and most especially not when they decided to start it (which was in the worst days of a chemo cycle), trying to manage handing them the information they needed as I as navigating the dreadful way one feelings as the poison that is chemotherapy starts taking its hold on your whole fucking body; inside, outside, and soulside…. and my immediate family were out camping. I still struggle with this, they love me, they mean to help and so, I have decided to find the grace in this experience.  Grace is something that has long eluded me. And if the lesson I am supposed to learn from this stupid fucking cancer is to find grace, then I ….

I can’t finish that sentence, it falls in the depths of despair that chronic illness can put one into if not careful to manage the  attitude.

I will leave it to, finding grace.

In other news of this cancerous nature, I am compiling a list (and I hate lists) of:

Bucket list for when my cancer shit storm is over

it includes turning my scars into tattoos, going dancing, going camping, going to Chimayo, returning to Hopi… I am totally taking suggestions!

 (and now some music to accompany my state of mind):

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the soft song of the white beauty

Searching for the sacred in the midst of my second cancer diagnosis

“The sound we hear when it snows is the soft song of the white beauty!”
~ Mehmet Murat ildan

My mother, I think, realized that I was falling into a kind of despair. I professed that I had lost my faith, though I had not become someone who hates faith – it was just gone.  She had noticed my flailing to make sense of my world, again and suggested a trip up north. A trip that included good food at The Turquoise Room at La Posada in Winslow and drives up to Hopi.

I pondered her offer, and thoughts of how I always loved going up to Hopi as a child were recalled.

I grew up in a magical place, there is a reason it is the birthplace of magic realism. My move to the USA (because I refuse to call it America, because frankly there is North America and South America and the USA being called America has never sat well with me) was not an easy transition, the USA doesn’t understand that kind of magic. There are exceptions to that. One such place was on my regular visits to Hopi as a newly transplanted child. There were two Hopi women who brought me back that magic. One was Helen Sekaquaptewa and the other was Elsie James and interestingly enough I just learned that they were related.

Elsie was local, and I got to see her more often. knew my great-great grandfather from when they both were at the Indian School in Phoenix, as a matter of fact he apparently introduced her to her husband. Whenever I would see Elsie, she would smile and tell me how much she loved my grandfather. She taught me how to make fry bread, often sitting with me at festivals at the heard Museum – teaching me the right consistency of the dough and the best way to pat the balls into a good piece of fry-bread, poking your fingers just so in the middle to prevent it from getting too puffed up when put in the oil. I cried deeply when I went to her funeral, she was extremely special to me.

Helen was the person that showed me that the special kind of magic from my youth in the Andes was present in the USA. I was relatively new to the USA, when my family went up to Hopi for a snake dance (probably back before non-Hopi were banned from freely joining them). I remember sitting on the roof, watching the most amazing ceremony – if you ever get a chance to see a snake dance, you should – they are memorable. I remember being in her kitchen, helping her fix food, and then I remember her taking me outside with her great-grandchildren to forage for wild spinach. Pointing out things that she thought I would find interesting as we walked to the edges of the village on the mesa.

So it was with these two influential Hopi women in my life that gave me a tie to my ancestors and the ability to see the magic in the land that I said yes to my mother, regarding a trip to what I could call my most local sacred space. It was a pilgrimage.

The drive up to Winslow was nice, we took the route through Heber-Overgaard and Holbrook. The Hotel La Posada is a fabulous space, designed by Mary Colter. I have a friend who claims, and rightly so, that it is a space full of feminine power that one can draw upon. We dined at The Turquoise Room.

I struggle as I write the next parts, as I want to honor Hopi guidelines on etiquette and yet share my experience as it relates to coming to greater peace with my own mortality and my hopes that I am of a Pahana clan. I met a Hopi prophet once.

We drove up from Winslow through to Second Mesa and the Hopi Cultural Center (HCC), stopping at the Little Painted Desert (in Navajo) on the way.  One of the things I like about visiting the Hopi Cultural Center is that there are carvers at the edge of the park next door.  There is something special about meeting the person or their family when purchasing something from them. You can find baskets, teas, rattles, bows and arrows, sculptures and Kachinas. I was able to bring to my life, five Kachinas; Crow Mother, Grandmother & Long-Haired. and Snow Maiden & Warrior Maiden.

I didn’t bring Snow Maiden to me at first. We decided to drive to K-town and see what was going on. The story is that a bunch of MIT student drove through once and fixed up a bunch of their computers, promising to return only to not be seen again.  One of the people with me has a son that teaches there and so we went to take pictures to share with them and see if we could get some MIT students to return. The whole ride, the image of her was in my mind, she was beautiful. We drove back to the HCC and held in my heart that she was still there. She was. I talked to the artist and his friend (who made my Warrior Maiden). They shared that the dances were happening this week and that I might see the Snow Maiden if I visit the ones at Shungopovi.

Front and back of my Snow Maiden

There was some discussion about going, but I was given the ability to decide and I did, I chose to go. If you are unfamiliar with attending ceremonies, revisit my link  above for etiquette. We drove to Shungopovi and looked for people standing on a roof, and headed that direction. We found a place to park and walked toward the sound, following people who were headed toward it. W walked through half-finished houses, through water puddles and made our way to the ceremonies.    There were not many white people there, maybe four aside from the three of us.  We sat on a door step and watched the ceremony.  It was special, oh so very special. And it was more exciting that I actually did see the Snow Maiden.

One of the things I learned from my friends on Hopi is that in a ceremony, the Kachinas are the gods… so, being able to see the ceremonial Kachina of the one that called to me was extremely special.

I ended my trip with four female Kachinas and one male.

Another goal of the trip was to find my tumor rock. This is something that my boss entrusted upon me.  When she got cancer she was in Sedona and saw a colorful iguana-esque lizard on a rock.  This was a message to her and she kept that rock, it was a representative of the cancer experience she was going through.  She came back and told me about the experience. I was in a shop a few days later when I found a lizard that could be put on the rock, as a representative of the experience.  When I was diagnosed with my second cancer, many years after hers, she brought me the lizard and said it was time to entrust it to me, that I had to find my rock.  So, I looked for my rock. I actually found two, one just outside Winslow and the other near  Heber.

My tumor rock while Warrior Maiden and Crow Mother watch.

I feel more optimistic about everything now. Instead of saying, for example, “my appointment tomorrow will tell me if I have metastasis” I am thinking in terms of “tomorrow I will learn if we can rule out metastasis”.   A simple exchange of words, but they have so much power.

 

 

the sky is empty

“I talk to God but the sky is empty.”
~ Sylvia Plath

Ge’ez, Sylvia Plath is sure a downer!

When I was little, I thought my grandparents lived in heaven, not because they were dead, but because they lived in Arizona (a stretch to see how I got here, I can imagine, but bear with me)….

I came to visit them with this kind of sky:

From this kind of sky:

So, when we went to visit (usually in early summer) our plane went up above the clouds, but never came back down through them… so, they must have lived in heaven, right? Please, also note that this was also around the time I was very saddened that Zeus and the pantheon of gods was not “real” and that my mother found me once, kneeling in the front yard praying to the moon-god. I was a wildly spiritual child.

Considering my family did not practice any real form of faith as I was growing up, they were Protestant in Roman Catholic countries after all – and any Protestants that lived where we were tended to be evangelical missionaries and not the most fun to be around – add in that we were considered to be “converted” and there were all those heathen Roman Catholics and indigenous cultures that needed to be saved. 

Many people tell you to lean in to your faith in trying times like this. It is amazing how much you seek something out, something that requires faith. But looking for something that is comfortable, that does not mean I must have a rebirth in any fashion, that means I don’t have to believe fossils were put on earth by satan to lure us to his evil ends,  something other than the spiritual connection to the cancer I got is because I have mommy issues, something other than I am not godly and got cancer because I am being punished… 

fuck – fuck – fuck – fuck

FUCK

How do you find faith in the midst of such fucking insanity.

Notice that is not a question, though it probably should be.

Anyway.

I learned that I had a sizable chunk of muscle removed with my last surgery. Granted, it was not the breast surgery removal of days of yore when women begged for a radical (nay, they wanted uber radical) mastectomy – the kind that took out muscle and bone (think ribs and clavicles). I’m missing 2 inches of chest wall muscle… and I’m still in disbelief… faith.

The way humans think is sometimes shocking to me. BUT, and it is a YUUUUUGE “but”, I get it. While my head understands that if treated correctly a lumpectomy has the same results as a mastectomy and you heal faster – but WTF does treating something correctly mean? My tumor was muscle adjacent, so does that mean that one of those a$$hole cancer monsters escaped and is it hiding somewhere? Somewhere that chemo and radiation can’t find?  Faith.

This is where finding faith again is crucial – but it is so freaking different this go around, faith that is.

If you are prone to that which is beyond the physical and don’t judge, I can share how I am re-learning how to lean in to faith again.  The thing is, I will most likely appear a heretic to you.

The one thing I know, is that I don’t think faith is about re-birth (that concept is what caused me to abandon faith before)… if it is for you, that is awesome – but I don’t buy it one effin’ iota.

I, beautifully enough, am finding this process of rediscovering faith kinda cool. and a bit painful.

It is especially nice since there is a disquiet in this process, of being a person diagnosed with cancer. It was present the first time and it is present again this time.  The subtleties of it that I experienced the first time is magnified, but both of my cancer experiences, so far, are incredibly similar… at least internally.

Because my first round was stage 1 and caught super early and only required surgery it was subtle. I felt like a fraud of a cancer patient because phht, it just needed surgery. People (most of them), aside from the time during the surgery put me at the bottom or low-end of a cancer continuum (that was practically equated with being cancer free).

In this round, where I am currently listed as stage 2B (and probably only because they did not take out more nodes and we will see if that changes after the next battery of test results come in), it is still sufficiently low on that continuum that I still feel like a fraud (though only less so because, after all, it looks like I am getting chemo and radiation this time) and the news about the cancer itself has just gotten progressively worse. Many of those same folks from my first experience are still like “well, you aren’t dying”.

I am adding silently  in my head; “that I know of” because I am still waiting for more tests and results of tests.

No, I am not dying (well, at least I don’t think so, but as I said… I will have a more definitive answer after I see the results of the next test). Trust me I celebrate that!  I am not healthy, I have a chronic disease that gives me (according to my radiation oncologist) an 81% 5 year survival rate (though this varies depending on the sites with such data). Yes, 81% is super awesome, but before this all went down I was with most others and had the general average population of a smidgen over 98% . A 17% drop in my life expectancy is still a crappy thing to have as a part of my life.

Trying to balance a good attitude with crippling doubts is a strange place to be.

I struggle. The struggle is real. Not because I have a Christian need for an after-life – but because I want to be more than just a life form – I want something divine to be a part of this experience, I want to lean in to something when I am so riddled and consumed with anxiety. A set of rituals that I can be a part of, a community where I feel like I belong. IN my head I often say to myself, I just want to be loved through this.

I read about Sherman Alexie today, something that I struggled with, but which spoke to the spiritual little girl in me that the unseen world is there for those that listen.  (the story is here).

I have found great comfort in so many people in my life, women and men – willing to be a part of this process with me.  I hate to lean on them, how do you answer the unanswerable to someone like me desperately seeking?

 

 

a flash of lightning in a clouded evening sky

“Hers is a timeless life weaving through other longer lives like a flash of lightning in a clouded evening sky.”
~ Beatriz Fitzgerald Fernandez, Shining from a Different Firmament

I think that the hardest part of this is trying to stay in a good mood, up-beat, positive. I am a period of waiting and it is just too much time for me. I miss the good ol’ days of daily appointments meeting, doing new things, meeting new people, taking new tests. i was exhausted during that phase of this – but things are settling, and people are on vacation, and I can’t seem to speed up time to get this crap experience behind me.

https://www.museodelprado.es/en/the-collection/art-work/women-gladiators/ee076233-5858-4a35-a5c0-9ce631cd5382
Women Gladiators by Jusepe de Ribera [Public domain], via Wikimedia Commons
People keep calling this cancer experience a battle, a fight, a difficulty… blah, blah, blah. I hate those words, and you can throw in journey in to the mix.

The truth is, that there is a certain call to gird up one’s loins in this stupid “experience”.  I mean there is prepping oneself for a cold and then there is cancer.

The other side is that in spite of the certain enlightenment we have in the western world about disease, cancer is still pretty weird.  I could share horror stories with you of a few of my dear, beautiful, well-meaning friends saying crazy shit to me about my new-fangled diagnosis – there are still people out there that think a radical mastectomy is the way to cure this beast and further they feel it is OK to imply that if I choose otherwise would be tantamount to saying I don’t want to try to stay alive for the sake of my son – how incredibly fucked up is that?  For the record, I think they have a brain injury, I tried to be patient.

Then there are those who are convinced that injecting THC into my boob will make it all go away. Bless them, but its exhausting because they love me and will argue with me about its advantages. I don’t for one second believe that doing this will cure me of cancer, it might well be part of the process but it isn’t the only one.

Maybe the weird part is that in spite of being the one with cancer, I am still forced to care for those that love me enough to talk to me about their opinions (none of these are medical peeps, they have a different level of communication about this with me).

I have a friend that is a nurse that is coming with me to most of my appointments and who checks in on me and for all the love in the world, isn’t trying to write my narrative of this experience. She knows, for example,  that I hope to avoid having a port if possible, so can advocate for me if I need it, but also knows that if it isn’t something I should avoid that she can walk with me in those facts.

Words matter, in spite of an all-encompassing need for the individual to throw out mental garbage via vocabulary – they matter –

I am not say that cussing like a sailor is bad, I love my salty friends, they keep it real for me.

I am not saying you have to temper each comment before you utter it, some of the greatest shit I have ever heard can come from those who have a tendency to insert their foot in their mouth.

I think I am talking about the need to talk for the sake of fucking talking, which is a luxury that should be rarely offered up.

Life is hard enough without verbal lashings for the sake of;

  • talking
  • sounding authoritative
  • funny
  • elitist
  • or what the fuck have you.

But what distinguishes talking like I refer above and talking – as in the real deal?

I think, and mind you this is my own thoughts, and this is a journal, not some expert piece of advice for the masses – this is me thinking out in type.

So, I think that a skill that is lost is that talking (the real ind)  is about the relationship between two or more people trying to communicate ideas to each other.  I don’t know if in our digital age that we can recognize this, mainly because we might be too busy trying to show someone we love them by sharing a silly buzzfeed video.

I do have people, though, that are cheking in on me – sending cards and the best emails and texts. they are so wonderful and when I get their notes I am humbled and am able to refocus on the gift of them in my life.

Like the one that sent me this for Independence Day:

Our rebel Pope (I say rebel because he is a Jesuit and they are apparently considered barely  Roman Catholic) said this:

“To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.”
~ Pope Francis

That quote was about a baby in the UK, I think – but there is something there that touches on what I am saying and you don’t have to be pro-choice/life/retrograde-abortion to try to appreciate it.

It brings back the experience I had when I dealt with cervical cancer and having people wanting to overwrite my narrative with the narrative of others – that should never have happened (I am still a little bitter). This is my story, I get to tell it.

In person, to someones face, I tell it very differently. On here, it is very raw, unfiltered, ever-changing, fierce, and scared-shitless, full of shit grammar and spelling.

My sister posted this song today on her social media, so as part of my quote/picture/song – I post it here (I miss her and my baby brother, they are my half siblets and live too far away).

Crisis management isn’t the same as crisis maintenance 

The Edge… There is no honest way to explain it because the only people who really know where it is are the ones who have gone over.
~ Hunter S. Thompson, Hell’s Angels: A Strange and Terrible Saga

This second surgery is a beast, I’m wiped out. I have felt off and with so much insanity in my life right now I wasn’t sure from whence it came.

I took the perfect spawn with me to surgery, it was outpatient after all. I’m not sure it was the brightest move I’ve made.  He was visibly upset by seeing me with an IV in my hand. He couldn’t stop touching and kissing me as we hung out in pre-op. My surgeon, who is a fucking rockstar, managed him very well. She asked him to please not correct her if he heard her say something wrong, it played right into his ego and made him more relaxed.

I went out to visit my mother, resting with an incredible view of “the supes”. I still felt squirrelly and off. Thankfully my Schatzy knows me well enough that he did the two things that turned the tide.

I’d like to imagine that anyone getting a prognosis that is worse that initially identified would feel the same.  I lay on the couch staring out the picture window when my dark side took over. I was trying be quiet and listen to my body in order to feel what muscle had been cut during surgery. 

As I did this I felt black blobs of doubt surround me, hopelessness descended and I hit a certain kind of despair.  My husband said he had been watching me and saw my face change, so he ran up to me kissed me and whispered in my ear “don’t do this, we will make it”. I felt the darkness evaporate.

Eve (The Nightmare) by Paul Gauguin

Later, as I lay on the couch again, my husband rubbed my feet. That foot massage was a miracle, the feeling of off and squirrelly dissolved. I began feeling more human again, something that I hadn’t realized I had missed feeling.

It’s interesting to note that a foot massage has been a transformative event both times I’ve had cancer. 

So here I am today, back to trying to find humor in this completely fucked up situation. 

Grateful for a tribe of people helping make this easier on my family.  Grateful for a family that’s here for me. Grateful for my mother and allomother.

So where’s the humor? I’m searching for it high and low. I promise.

::deep breaths::

OK

My surgeon used medical grade superglue on my incisions. Which is pretty cool.  I have two incicions one near my armpit and the other around my nipple. Only my armpit incision needed to be re-opened. Which means that I have a nipple that is covered with flakes of superglue. Yes, the superglue is flaking off and I’m reminded of eucalyptus trees and of peeling bark. It’s weird. My nipple, however, looks great… underneath it all. 

This is all starting to feel like a comedy of errors when coupled with my Hello Kitty “freezer burn”.

Intellectual fugitives – update

He was interested in research (or at least feigned interest), but Li was considered an intellectual fugitive, unable to commit to any one question or plan.
~ Siddhartha Mukherjee, “The Emperor of All Maladies: A Biography of Cancer”

I am listening to Dr. Mukherjee’s book right now and this phrase caught me. I love the idea of being an intellectual fugitive.

For the record, Li was the physician responsible for the first successful use of chemotherapy, he was fired by the NCI because they though his idea too aggressive. 

One of the things that I love about anthropology is that it, out of the plethora of other intellectual disciplines, allows for more of this than any other.

Someone I knew called me a dabbler once, I think they meant it in something akin to this idea – but dabbler doesn’t sound as nice.

I think we need to have intellectually curious people, a cohort of intellectual fugitives, people who can see relationships beyond the one question or plan. It is arguably a part of that road map to discovery, and a necessary aspect of the path.

But that is merely a musing and not what and why I am here today.

you crazy nipple haters
that orange circle is a modesty patch for all the nipple haters I know.
This cancer shit is tough no matter what – there is so much fear that needs to be managed. It is actually surprising, a test of human resilience perhaps – makes me think I am a devout coward, because I frankly hate having to do this shit.  I find that even keeping busy is not enough to bring peace of mind for a stretch of time longer than maybe 15 minutes.

Where am I right now…

  • I am very close to three years of remission from my first cancer.
  • I am newly into the diagnosis of stage 2B breast cancer, the edge of what is considered early detection.  Yay right, but my heart gets heavy when I think about how my lead in to surgery was so close to being sure that it was stage 1A – and that  following it jumped to 2B and that this is huge and makes my heart feel heavy and squeezed.

My cancers are distinct and unrelated. I write this for those of you that might be thinking this, it is not metastasis. A blessing – and how weird is it to call having two cancers a blessing.

I do know that I must have both chemo (regimen is still to be determined)and radiation (six weeks), with hormonal therapy for 5 to 10 years.

I just don’t really and fully know what that will look like yet.

 

 

 

tickling the tail of a sleeping dragon

“tickling the tail of a sleeping dragon”.
~ Richard Feynman (the story behind this quote)

There is an infinitesimal moment in certain kinds of situations that have about them a sense of the surreal, of suspended animation, of some sort of unexplainable something that detaches you from your surroundings and yet manages to implode you into them. Everything makes sense, yet nothing does.

Getting told gut wrenching news can be one of them.

I had wanted to come here and put into written posterity my fight with Hello Kitty that lead to a paisley shaped second degree burn. A story such as this had elements of the absurd coupled with a funny anecdote about managing pain, discomfort, and numbness after surgery.

I’ve been pondering, as well, putting down the why… as in why I share this “journey” in the way I do. (side note: I hate the word journey in this case… Journey is a beautiful word, cancer should never be a part of its etymology)

But really, all I “feel” like I want to do right now is to throw things and break them while cussing like an angry drunken sailor… at least until I see that in the whole scheme of things I’m pretty lucky and behaving like that impulse, is pretty self-indulgent and whiney so I don’t and just end up having to tell my husband that I’m talking to myself again.

I do talk to myself quite a lot now, primarily because I start thinking of people who have expressed some dislike towards me and it’s me asking them if they’re happy now that I’ve got cancer… again.  It’s a crazy conversation I am having with myself. I figure it is how I am processing the whole fault of this situation – as in it is my fault while trying to understand why – I must be a terrible person, but I don’t think I am but maybe those who do think I am can understand this and I am, I guess, trying to see it through their eyes. Again, I can see this is a clinical process, but it is one I am going through – it is so weird.

May be that I need to be appropriately embarrassed by my “fight” with Hello Kitty, and get my mind off of this sinking hell hole of self-pity or self-loathing.  The “why me” is a constant battle in managing a chronic disease such as mine, even more so this second go around. I fight it through humor and laughing at myself.

So, back to Hello Kitty, and this popsicle eating dollar store Hello Kitty gel ice pack in particular…

This is the beast that burnt me

In a nutshell, I wasn’t thinking one single bit.

I sleep on my side, and on the side where I had my surgery in particular. I am one of those people who turns in to a heat emitting furnace when sleeping which made my incision sites (yes, there are two) feel warm, too warm. So, I would wake up and stumble to the kitchen, open up my freezer and take out one of my perfectly sized Hello Kitty gel ice packs and put them in my sports bra and head back to sleep. The instant cooling felt wonderful and in such a state nary a consideration was given to the fact that I put a gel pack straight on my skin. Please take this as a warning, doing this is unbelievably stupid and I know better and still did it.

The resulting second degree burn is paisley shaped and about two inches long and an inch wide, its blister has popped. I will admit that I have to fight the urge to draw on it and make it pretty, if only to be a distraction that I jumped up a whole stage in cancer.

All of these distractions I give myself feel like I am tickling the tail of a sleeping dragon, because the medical news I get never seems to get any better, just gut-wrenchingly worse.

::tickle::tickle::

 

Keep calm – 102/366

What is testing me?

Cancer.

It tests me all the fucking time. The expletive is needed, it is that severe.

I saw my oncologist today. All was good and my parts are working, but once cancer enters the picture… your confidence in your own health goes to shit.

Not all the time, but yes… all the time. New aches have moments that make you think “metastasis?”, old aches make you think “missed location for tumor”… every little things, brings it all there. And I know my odds… I have the same survival rate as someone who didn’t get a cancer diagnosis, that is how early we got it… but there was an it to be got.

I realized last week why I was feeling insanely mixed up (anxious)… this appointment was coming. It, I imagine, will continue like this. I hope that it becomes routine enough that I begin to find some stability in it, but it still makes me a little upset.

 

Challenges – 44/365

My biggest challenge it pretty hard to explain, but let me try.

at its root and if I had to define it in one sentence it would be;

My biggest challenge is managing my feelings about my cancer diagnosis.

I have tried to break it down in my head.

Cancer, still has the vestiges of being a forbidden disease, the one people don’t talk about… so frightening so heinous that when one died from it the mattress was tossed. While we all don’t go to the extremes, I still see it whispered, I find that people do not like to talk about it openly, but prefer hushed gossipy whispers.

When you add to that what kind of cancer it is, you get a certain other subtext going on.  I know from my work in breast cancer that there are issues about the physical and female aspects that are altered through the process. Many of the women I talked to would try to explain the altered self perception after a mastectomy.

Since I can only talk about, with any real authority,  my cancer… I can tell you that for cervical cancer being loudly proclaimed a sexually transmitted disease it hangs there, in the ethers after people hear about it.  They look at me, silent.

Now, that may be a by product of the whole “hush, shhhhh… it is cancer” thing. It gets more specific though.

I still so vividly recall sitting at dinner with a friends and some friends of one of that friend to talk about how improve the dialog about HPV vaccination among the local LDS community. My friend mentioned that she was a survivor, but that her husband was older when they married. The other around the table cooed and talked about how it couldn’t be her fault because after all, her husband was older and as such must have been “experienced”. While that may certainly be true, I know my friends sexual history and that was a super weak thing to let happen, because she had been sexually active for at least 5 years prior to her marriage. I was so upset by that that I said, well I am a survivor too, but my husband is younger. No one could look me in the face. One of the people was a mormon physician and I sure hope to her God that she was embarrassed. That was a stupid reaction for a physician to make, especially one who understands disease.

I think that was the worst part of my experience.

The weirder parts are reading tabloid news about which rock star has throat cancer and while knowing that they smoked and it was surely a contributor that my guess is that they have a cancer related to the same virus from their own forays in to oral sex.  But, their publicist imagines that it is easier to blame it on the cigarettes.

No one knows my sexual history, and it is really none of anyone’s business but my own.

That stigma is so awful and I am at a loss of how to dispel it without making my personal sexual story part of the narrative.

The scenarios in which one could get a cancer causing HPV infection are not as lewd as most people want to assume, but some of them are.

I was asked to consider being a speaker at a relay for life event by a friend. I told her that I would be happy to, but that I didn’t have a sexy cancer.  Sexy cancers being the kind one can say “it’s rare” or “it’s miraculous how it was detected”… you get my drift. I think she realized how controversial STI cancers are.

STI, can we come up with a better name?

Will you take the better name challenge and suggest something? Or refuse to fall into a gossipy mode when thinking about this kind of thing?

Come on, I dare ya!